endo – Fight Like a Girlhttps://www.fightlikeagirlclub.com
Cancer Support Community: Information, Inspiration, and Stories for Women's EmpowermentMon, 15 Dec 2014 20:42:44 +0000en-US
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1 https://wordpress.org/?v=5.2.6Rachel’s Fight Like a Girl Story (Endometriosis)https://www.fightlikeagirlclub.com/rachels-fight-like-a-girl-story-endometriosis-3/
https://www.fightlikeagirlclub.com/rachels-fight-like-a-girl-story-endometriosis-3/#commentsFri, 28 Jun 2013 15:32:34 +0000http://www.fightlikeagirlclub.com/?p=9887If you were to ask me when my endo journey started, my initial response would be that it happened when I was 19, just in time to steal away what should have been my “roaring twenties.” But really it all began years before that. Honestly, I think it’s always been there, lurking, a silent, progressive …

]]>If you were to ask me when my endo journey started, my initial response would be that it happened when I was 19, just in time to steal away what should have been my “roaring twenties.” But really it all began years before that. Honestly, I think it’s always been there, lurking, a silent, progressive killer.

My first period came when I was 12 and for the next several years it was irregular, heavy and painful. I remember the cramps being horrific sometimes, but I just thought that it was a normal part of being a woman. I was active in sports in junior high and high school and I can remember how I hated having practice or a game when I was on my period because the pain and heavy bleeding made for a far from pleasant experience.

Finally, when I was 17, my mom took me to my first gynecologist and he diagnosed me with PCOS and started me on birth control pills. As someone who has always struggled with my weight, I despised it when the pills caused me to gain even more, but they did help regulate my periods. I had less pain and lighter bleeding, so I thought the worst was over.

Fast forward now to the fall of 2004, the beginning of my second year of college. Just a few days after I moved into my dorm, I began experiencing severe nausea and vomiting, on top of starting a very heavy, painful period. I couldn’t keep any food or water down and eventually landed in the ER, exhausted and dehydrated. The doctor treated me for a virus, gave me fluids, and sent me on my way, but my symptoms continued over the next several weeks, including the bleeding and pelvic pain. I attended only a handful of classes during that time and quickly fell behind.

I finally made the decision to withdraw from school in order to go home, see my doctor and concentrate on getting well. While I knew I was very sick, I fully believed it was something that would be easily taken care of and that I would be back at school in January. Instead, I saw my doctor and he immediately believed that I had endometriosis. He scheduled me for a laparoscopy in November, which proved his diagnosis correct, and then planned to immediately start me on Lupron. There were complications with the insurance company, though, and I wasn’t able to receive my first Lupron shot until two months after my surgery. By then the pain had already returned and the Lupron did nothing to stop it.

It was clear by this point that I wouldn’t be returning to school as soon as I had hoped. Not only because of my health, but I had also received noticed from the university that I owed nearly $1,500 for the semester and wouldn’t be able to enroll again until the bill was settled. Had I stayed in school, my parents and I wouldn’t have paid anything thanks to scholarships and a federal Pell grant, but my early withdrawal had changed all that, voiding my grant and one of my scholarships.

I had a second lap just three months after the first and my doctor removed more endo. I also had a second Lupron injection, hoping for better results to no avail. My pain continued with a vengeance and that’s when my doctor spoke the dreaded word: hysterectomy. I was barely 20 years old! As great as he had been up to that point, red flags jumped to immediate attention when he so easily suggested a hysterectomy as my next option. I wouldn’t hear of it and began looking for another doctor.

I soon found a wonderful new physician and he was amazing in every way an endo woman needs: patient, compassionate, collaborative, and fully committed to helping me get my life back. He started me on a new form of birth control and assured me that hysterectomy was not in his treatment plan. I continued to be in constant pain, though, despite any medicinal treatments. My new doctor had prescribed strong pain pills, but most of the time they only took the edge off. I hated that this was what my life had resulted in – constant, intense pain, unpredictable bleeding, and a plethora of hormones and pain medicine. Though it had been less than a year, it felt like a lifetime had passed since I was a normal, carefree college student.

In July 2005 I had my third surgery, only eight months after my first. This time my doctor didn’t find any endo, only lots of scar tissue. He didn’t doubt that endo was causing my pain, though; he explained that he believed my endo was deeply rooted in the muscles and tissue within my pelvic area. During my surgery he removed a thin lining of the peritoneum and made cuts to some of the uterosacral nerves in hopes that this would alleviate some of my pain.

Over the next several months, despite the raging pain, I attempted to find a job, if for no other reason than to feel somewhat productive in my day to day life. Going back to school seemed so far out of the question because of the endo and the money I owed, so I wanted to at least try to do something purposeful. And though I had insurance through my dad, I still needed money for prescriptions, co-pays and gas. Between the pain and frequent doctors appointments however, it wasn’t easy to maintain employment. I frequently had to call in sick because of the pain and my boss wasn’t always understanding.

My doctor and I continued exploring treatment options, different birth control pills mostly, and eventually he suggested Aygestin. It was my first ray of hope in nearly two years. It stopped my periods and for the first time in what seemed like forever, the pain wasn’t so bad. By this time it was mid-2006 and while I worked to fix my health, I was also looking for ways to fix my personal life. I was in debt and I desperately wanted to go back to school, to leave the dead end, low paying job I was aimlessly fighting to keep. Just as I was seeing the endo improve, my dad offered help that would allow me to return to school, this time at a community college close to home. I left my job and started classes that fall, and with the Aygestin working its healing and the endo lying mostly silent for a while, I was able to complete my associate’s degree over the next two years.

Reality hit midway through my second year when I turned 23. I was notified by the insurance company that 23 was the magic number that meant I could no longer be counted as a dependent on my dad’s policy and my coverage ended thirty days after my birthday. I could no longer afford the Aygestin, which was $200 a month without insurance. By the time I graduated in May 2008, my periods and the constant pain were back. Not wanting to give up, though, I enrolled in a nearby university for the fall semester, with plans to enter their social work program, but I barely made it through the term. With no insurance and little money, my only treatment for the endo was pain medicine and I struggled to afford my doctor visits. I was in horrible pain and bleeding for weeks at a time. The whole semester felt eerily similar to a time just four years earlier.

In March of 2009, as I was struggling through a second semester at the university, my doctor suggested another surgery, this time to remove my left ovary since the majority of my pain had always centered around it. Without insurance, though, I had little option. I talked with my dad, but he was unwilling to help with a surgery he saw as unnecessary. He hadn’t been the most supportive or understanding regarding my endo, even telling me that it was just cramps and something I had to deal with. Feeling defeated and with no desire or physical ability to finish a semester I was already failing, I withdrew from school again, upsetting my dad even more.

Because he was my primary financial support, however, I had little choice but to listen when my dad proposed I get another opinion, suggesting my stepmom’s OB/GYN. Not wanting to leave the wonderful doctor I already had, but feeling helpless with no money or insurance and no way to afford the surgery my doctor had broached, I conceded, making an appointment with the new physician. He immediately suggested several different forms of birth control that we should try: pills, the Nuva Ring, and Depo Provera. Knowing my previous lack of luck with such methods, but again feeling helpless to find any other options, over the next year and a half I tried them all. I had the most success with the Depo Provera, which gave me results similar to the Aygestin for the first 6 months. After that, though, the effects seemed to fade and it no longer provided any relief.

During this time, both to please my family and myself, I determined to finish my degree one way or another. I knew the pain kept me from succeeding in traditional classes, so I enrolled in an online school and by December 2010 I had completed my bachelor’s degree in psychology. I immediately began looking for a job, even though I knew full time work would be just as hard as, if not more than, full time classes. I felt like it was what everyone expected of me, though, and I both wanted and needed my financial freedom and health insurance. I started a job in mental health counseling in April 2011, but the stress of ten hour work days and the general nature and circumstances of my job quickly took their toll. By June I needed surgery to remove my gallbladder, and then in September my fourth lap for endo. To their credit, my employer was very accommodating considering I was so new to the position, but eventually my frequent absences and the need for extended leave after my lap left them no choice but to terminate. Just six months after I started, I was fired.

On the same day that I lost my job, I also had a follow up with my doctor. I was still in so much pain, even after my surgery. He had already told me that he only found one spot of endo on my ureter and that he did not remove it because he feared damaging the tube. Looking back now, I question his skill and thoroughness. He readily prescribed me pain medicine, acknowledging that I had a legitimate need for it, but in nearly the same breath he told me that there was nothing else he could do for me and that I just needed to get pregnant. He was very cold, matter of fact, and I left his office in tears, knowing that I wouldn’t be back.

Aside from one recent ER trip, I haven’t seen a doctor since that day. With no job or insurance, it has been impossible to afford an office visit, especially since I need a new physician and almost any new doctor requires payment in full. My husband and I were married in May 2012 (my amazing ray of sunshine during the past year), but the insurance offered through his job was just too expensive, especially with finances already extremely tight. Finally, in November, we made the difficult decision to move in with my mom in order to save money and allow him the chance to find a better paying, more beneficial job. While it was a big shot to our pride, ultimately it’s been a huge blessing. My mom, having dealt with it all herself, is amazingly supportive of my disease, and just having the chance to relax and make a fresh start has taken so much stress away.

That’s not to say I haven’t had my bad days, though. I’ve had some major pain flares and bleeding episodes in the last few months, each one lasting days to weeks at a time, and most days I don’t manage more than a shower, if that. I’ve broken down in tears several times recently, my emotions ragged and often hysterical. I worry that my lack of healthcare has left my insides vulnerable, an easy target for the endo to prey on and destroy. The best treatment I can provide my weary body right now is ibuprofen, hot baths, and my heating pad. I rest as much as possible, but I don’t sleep well and stay constantly fatigued. Always at the front of my mind is my desire to be a mom and the fear that I never will.

I’m hopeful, though, and my faith, however battered, is intact. I waver, sometimes daily, but I’m here and taking it one day at a time. I’ve slowly learned over the last eight-plus years that my life may not be what I dreamt of or pictured, and it’s certainly not what others expected of me, but it is still my life and it’s blessed. In the midst of the pain, there is still beauty, if only I look for it. Things may not have turned out the way I thought they would, but they did turn out, and I’m still here. I can’t give up now. I may not have had my roaring twenties, but maybe, hopefully, my best days are still ahead of me.

Rachel
West Virginia
Submitted 4-23-13

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

]]>https://www.fightlikeagirlclub.com/rachels-fight-like-a-girl-story-endometriosis-3/feed/4Amanda’s Fight Like a Girl Story (Endometriosis)https://www.fightlikeagirlclub.com/amandas-fight-like-a-girl-story-endometriosis/
https://www.fightlikeagirlclub.com/amandas-fight-like-a-girl-story-endometriosis/#commentsMon, 24 Jun 2013 15:27:29 +0000http://www.fightlikeagirlclub.com/?p=9880I have Stage IV endometriosis. I found out because an ovarian cyst landed me in the ER. Three times. Via surgery, I found out my particular case includes bowel endometriosis, with adhesions that have fused my colon to my uterus and cul-de-sac. I write this post as I recover from another battle with what I’ve …

]]>I have Stage IV endometriosis. I found out because an ovarian cyst landed me in the ER. Three times. Via surgery, I found out my particular case includes bowel endometriosis, with adhesions that have fused my colon to my uterus and cul-de-sac. I write this post as I recover from another battle with what I’ve endearingly termed #gutsofire.

My surgeon said my case is the worst she’d seen in her career. There were implants all over my pelvic cavity – on all my organs except my stomach & appendix. While the doctor was able to clean me up, she could not do anything about the endometriosis on my organs or about anything that’s fused together. I also have a cyst on my uterus. She couldn’t remove that, either, not due to impossibility, but due to her own comfort level. I appreciate her not experimenting in my pelvic cavity. She did say, however, “Should you ever need any more surgery, you need to go to the guy who invented it. His name is Camran Nezhat, here’s his website.”

I’m a 2nd year social work PhD student whose ultimate dream is to help homeless youth produce documentaries that will lead to systemic changes that will improve their lives. In order to make this dream a reality, I need to get a handle on the endometriosis wracking my body. There is no cure right now, but this surgery is the best treatment & Dr. Nezhat is the one who invented it.

It’s coming up on a year after my surgery and I still experience a ton of pain from the endo and I still don’t eliminate correctly. I tweeted @CNezhatMD & he told me to email him. I submitted my medical records & am now scheduled to have surgery with him on June 26th! I’m still working to raise the $5600 I need to to cover travel, lodging, & the deposit (due the day before surgery), but my HopeMob campaign is moving along & I am hopeful.

I really appreciate the opportunity to share my story; I’m so glad this club exists!

Amanda
Illinois
Submitted 4-21-13

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

]]>https://www.fightlikeagirlclub.com/amandas-fight-like-a-girl-story-endometriosis/feed/1Kelani’s Fight Like a Girl Story (Endometriosis)https://www.fightlikeagirlclub.com/kelanis-fight-like-a-girl-story-endometriosis/
https://www.fightlikeagirlclub.com/kelanis-fight-like-a-girl-story-endometriosis/#commentsWed, 06 Feb 2013 18:05:56 +0000http://www.fightlikeagirlclub.com/?p=7344It started after 8th grade (13 years old or around there). My stomach was always hurting. My periods started in 2004 so not long after that I started getting all this pain and nausea. I went to my family Dr and she did some tests and thought it was a food allergy but no matter …

]]>It started after 8th grade (13 years old or around there). My stomach was always hurting. My periods started in 2004 so not long after that I started getting all this pain and nausea. I went to my family Dr and she did some tests and thought it was a food allergy but no matter if I ate or didn’t eat I still had pain, so I was referred to a gastro Dr and I was put on sooo many pills and I have had as of today 3 endoscopies and 2 colonoscopies. I have also had a small bowel follow-through(they make you drink this white stuff and it highlights the bowels to see if there are any blockages or anything). They didn’t find anything with any of the first test set of tests. I’ve also had a ton of blood work done. I was almost diagnosed with Crohn’s disease but no matter what pills I went on it didn’t help, so a few or so years went by and I was still having pains so we (my mom and I) finally went to a ob/gyn and he had his ultrasound tech do an internal ultrasound and he did a pelvic exam and he said I have endometriosis. I didn’t know what it was and I don’t know if I asked him what it was. I was just, like, okay. Now I know what I have. How do we treat it? He put me on birth control and told me to give it a month and I should see a difference. I did and it was a relief that we finally figured out what I had. It got so bad before that that it got to the point where I dropped out of high school in my sophomore year (my class graduated in 2009, so I’m not sure how old I was but it was in 2006 or 2007).

But I was still having pains every now and then and it got to the point where in April 2011 I went in to see my doctor again and he said that we need to go in and take a look around. At that time I was working so I had to take a leave of absence from work and my surgery was scheduled for April 18th, 2011. I had stage 2 endometriosis and he burned off everything he found. He said it was all on the back side of my uterus and my ovaries were fine. I could still have kids if I wanted to.
After I healed from the surgery, I was okay until September 17, 2011 when the pain came back with a vengeance. I was SUPER nauseated so I waited it out to see what it might be but I finally went to my family doctor (which is a different one from when I was younger) and he did some tests and asked questions and I had an ultrasound done to see if everything was the way it was supposed to be. We thought it was my gallbladder because my uncle, grandma, mom, and brother had had theirs taken out but my gallbladder was fine and it didn’t hurt after I ate a big meal (he wanted me to try to see if it did).

I was still having pain so I called him back and he ordered an endoscopy which I had done on December 12, 2011. In my stomach, there was an area that was red, swollen, and inflamed so the doctor performing the procedure took a biopsy. It came back negative for h. pylori but he gave me some pills that helped and I took them all (once a day) until they were gone (they are now gone).

I went back to my ob/gyn in December 6, 2011 as well and he put me on a different birth control pill and I’ve been having a lot of pain since then, not sure if my body just needs to get used to the new pill or if my body doesn’t like beyaz (the BC pill he put me on). The plan now is for me to try this new pill and not have a period for 3 months ( I have one every 3 months) hasn’t been 3 months yet, almost done with my first pack and still in pain. He wants me to come back in 6 months so when all my samples are gone that he gave me and go from there or before that if the pain gets really bad. We also talked about the IUD Mirena and he said he has had some success with his Endo patients and I wouldn’t mind trying it, it’s just the out of pocket cost that I can’t afford. I haven’t called him because i’m not sure if it’s from the bc pill that is causing so much pain or what. I called him Jan 2012 and i’m now on a new pill that I have been taking now and I think it’s helping with the pain. I still have pain but not as bad as with the Beyaz. The new pill is loesterin24Fe. I’ve also been drinking a lot of water which I have found that helps a little with what I eat, I no longer like fast food places.
It’s affected me emotionally, physically and sometimes mentally. I have issues with my family members. Some don’t understand and some are trying to understand. I haven’t dated a lot cause of the pain and afraid that i may not find someone that will be able to handle it. It has put a damper on my social life as well but i am trying to get everything back on track.
I don’t have anything else that i know of besides endo. I think i have chronic fatigue syndrome but i haven’t been diagnosed with it.

Kelani
Utah
Submitted 2-26-12

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

]]>https://www.fightlikeagirlclub.com/kelanis-fight-like-a-girl-story-endometriosis/feed/1Sarah’s Fight Like a Girl Story (Endometriosis)https://www.fightlikeagirlclub.com/sarahs-fight-like-a-girl-story-endometriosis/
https://www.fightlikeagirlclub.com/sarahs-fight-like-a-girl-story-endometriosis/#commentsSun, 19 Aug 2012 00:24:32 +0000http://www.fightlikeagirlclub.com/?p=6826I started my period when I was 9 years old. It was the scariest thing that had ever happened to me. Shortly after that, the pain and the bleeding was uncontrollable. My mom was concerned (she and her mother have endometriosis). She took me to the doctor and they just put me on birth control. …

]]>I started my period when I was 9 years old. It was the scariest thing that had ever happened to me. Shortly after that, the pain and the bleeding was uncontrollable. My mom was concerned (she and her mother have endometriosis). She took me to the doctor and they just put me on birth control.

After 10 years of suffering, my mom and I convinced my doctor that something needs to be done, so I had surgery. My mom was right, I had endometriosis. After surgery, they started me on Lupron Depot. That was an experience of its own! At this point I was 19. Everything then seemed to get back on track until a year later.

Now, I am back to square one. They think that it has spread to my bladder, due to unable to feel it. This is so embarrassing. I am 21, and I’m wetting my pants! I am now back on the Lupron shot, hopefully this will hold me over for a while. The only thing I care about is one day being able to have children. I know they tell women all the time with the same thing I have that they will never be able to conceive. All I have to do, and I encourage others to do the same, is stay positive!

Sarah
Missouri
Submitted 12-13-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

]]>https://www.fightlikeagirlclub.com/sarahs-fight-like-a-girl-story-endometriosis/feed/15Diana’s Fight Like a Girl Story (Endometriosis)https://www.fightlikeagirlclub.com/dianas-fight-like-a-girl-story-endometriosis/
https://www.fightlikeagirlclub.com/dianas-fight-like-a-girl-story-endometriosis/#commentsSun, 29 Jul 2012 07:48:44 +0000http://www.fightlikeagirlclub.com/?p=6782My name is Diana. I’m 23 and I was diagnosed with endometriosis on January 21st of 2011 which was when I had my lap procedure done. I had always had painful periods growing up even though my period started at a normal time for a girl. It wasn’t until 2 years prior to my …

]]>My name is Diana. I’m 23 and I was diagnosed with endometriosis on January 21st of 2011 which was when I had my lap procedure done. I had always had painful periods growing up even though my period started at a normal time for a girl. It wasn’t until 2 years prior to my lap surgery that the painful cramping began.

Then, things started changing. The one I noticed right away was that I was having problems with bowel movements as they became more and more painful. At that point, sex also started becoming more painful at times, but was more frequent the closer it came to my lap date. I also had more issues at work in terms of my pain, and even socially, as I’d be at work or out somewhere and I’d have to duck into a bathroom for a long period of time while the pain subsided enough to where I could go back in and work. The point that drove me to actually talk to my gyno about it was when I was at my boyfriend’s place and I dropped to my knees in pain and was bawling.

When I went to see my OBGyn, she was so understanding and knew exactly what I was talking about and it made me feel better knowing that someone didn’t think I was crazy or that I was just having really bad period cramping. They did the lap procedure and found me to have mild endo, which was good, but they informed me, and I have since found out, that there are microscopic endo cells that they can’t get and, even now, I can feel it sometimes though not nearly as bad as I used to. I still wanted kids but didn’t want to be placed in menopause state so I went on the Depo Shot. I’ve been on it now for 9 months and during this 9 months I’ve only had pain associated with it maybe 3 times.

I know that there’s always the risk that it can come back, and I’m a bit worried in the future of not being able to have kids, but I’m still going to fight on and make it through no matter what. I wish you ladies the best in your fight against endometriosis and I hope that one day there is a cure for this that completely reverses and eliminates it.

Diana
Nebraska
Submitted 12-6-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

]]>https://www.fightlikeagirlclub.com/dianas-fight-like-a-girl-story-endometriosis/feed/11Annaliese’s Fight Like a Girl Story (Endometriosis)https://www.fightlikeagirlclub.com/annalieses-fight-like-a-girl-story-endometriosis/
https://www.fightlikeagirlclub.com/annalieses-fight-like-a-girl-story-endometriosis/#commentsFri, 27 Jul 2012 16:32:17 +0000http://www.fightlikeagirlclub.com/?p=6735Hello ladies, I’m Annaliese. I’m 20 and I have been fighting the pain of endometriosis since the age of 14. I had my childhood doctor tell me there’s nothing wrong, that it’s normal to miss periods. She also didn’t care about the pain. They put me on the 10-day pill to get my periods started …

]]>Hello ladies, I’m Annaliese. I’m 20 and I have been fighting the pain of endometriosis since the age of 14. I had my childhood doctor tell me there’s nothing wrong, that it’s normal to miss periods. She also didn’t care about the pain. They put me on the 10-day pill to get my periods started again, which really hurt.

At the age of 18, I finally got sick of getting no answers so I made an appointment with the ob/gyn. That was in September. He told me that day that it was endometriosis. He had me in surgery that November. I didn’t get answers from the surgery, however, because he couldn’t get the camera through because there was way too much scar tissue.

So now I’m dealing with having no period for 15 months, serious pain, the pain of wanting to be a mother and knowing the only way that’s going to happen is getting help from my doctor. The great news is my tubes are open I just need a steady period now and not to live with this everyday pain :(. But I fight like a girl and I know that someday all of this will be behind me and I will have a beautiful bundle of joy. I will keep everyone posted with updates.

Annaliese
Massachusetts
Submitted 11-30-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

]]>https://www.fightlikeagirlclub.com/annalieses-fight-like-a-girl-story-endometriosis/feed/7Lindsay’s Fight Like a Girl Story (Endometriosis)https://www.fightlikeagirlclub.com/lindsays-fight-like-a-girl-story-endometriosis/
https://www.fightlikeagirlclub.com/lindsays-fight-like-a-girl-story-endometriosis/#respondFri, 27 Jul 2012 08:14:15 +0000http://www.fightlikeagirlclub.com/?p=6718Well, where to begin!! When I first got my period, it was extremely heavy and painful! I was put on birth control about a week after that to see if that would help. It definitely made a huge difference up until 2005 when it all began! I was at work one day and the pain …

]]>Well, where to begin!! When I first got my period, it was extremely heavy and painful! I was put on birth control about a week after that to see if that would help. It definitely made a huge difference up until 2005 when it all began!

I was at work one day and the pain brought me to my knees. They sent me home from work but that evening I just couldn’t take it anymore. Nothing was helping it. My mother then brought me to the ER to make sure it wasn’t my appendix. They hooked me to an IV until I was well enough to go home. I was having so many episodes like this that I was at the hospital a few times a month. They then started thinking that I was just there for the meds. I was admitted to the hospital and I thought ’THANK YOU!!!’ Little did I know she was giving me T3’s until I had to see a psychiatrist! I started refusing the pills as they weren’t helping me. The next day the doc came in to see me and said I couldn’t be discharged until I talked to a psychiatrist because she thought that it was all in my head and that I was just a teen wanting pain meds. I kinda of lost my temper in frustration.

After that experience, I decided that I would kind of play down the pain as I thought there was no hope in getting help after seeing so many different doctors and getting so many different prescriptions that weren’t helping. Eventually, I couldn’t handle playing down the pain anymore so I went to see my family doctor to get a referral to see an OB/GYN. I finally went to him and he requested doing a laparoscopy surgery and at this point I was all in! I got the results of that and he drained a cyst and I was to go back and see him in 6 weeks. 6 weeks was up and I was still in pain. I told him that I thought it was something else and he shook his head and walked out of the office. I cried. Back to square one.

I will shorten this up so I don’t end up writing a book:

I then got a referral to see another OB/GYN in my area and she was a life saver! I walked in, told her my story and then almost instantly she said “endometriosis”! I’ve never been so happy to hear that I had something wrong with me. For the simple fact that I didn’t feel so stupid per say, that it wasn’t ’all in my head’! I went on to have a laparascopic surgery which gave me an overall pretty decent outcome. Pain then started that was unbearable about a year later (I still had pain but it didn’t stop me from doing day to day things). I then went for another one. That one lasted me about 9 months before the pain came back. My doctor recommended that it’d be time for another one to see if I could get rid of some more pain as it was horrendous at this time.

I woke up from my surgery in excruciating pain. They had hit a vein and couldn’t stop the bleeding while going in and had to open me up. Instead of three 1 cm scars, I have two 1 cm scars and a 12 cm scar. While she was in there she discovered that my right tube (which is now destroyed) was attached to my appendix by scar tissue which is what is causing the pain on the right side and endo everywhere else. My pain, after I had recovered from surgery (wayyyy longer recovery time as I had complications after surgery), went away for about 8 months this time.

I am now waiting to get into see a specialist off island to see what my next step is. I’m terrified now for another surgery due to what happened the last time. I guess I’m super frustrated as to what to do next and some days are harder than others but constant pain for 6 years and counting really gets to a person. I have amazing friends that stand by me and family as well. I have just recently started looking at sites such as this one and hopefully this will help me on my emotional days to stand back up and fight even when I don’t want to get out of bed that day!

Anyways now that I’ve written a novel I hope everyone knows that they are not alone in this fight! Even though it’s hard to live with an ’invisible’ disease we all need to fight this fight together, not alone!

Thanks for reading!

Lindsay
Canada
Submitted 11-24-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

]]>https://www.fightlikeagirlclub.com/lindsays-fight-like-a-girl-story-endometriosis/feed/0Lanah’s Fight Like a Girl Story (Endometriosis)https://www.fightlikeagirlclub.com/lanahs-fight-like-a-girl-story-endometriosis/
https://www.fightlikeagirlclub.com/lanahs-fight-like-a-girl-story-endometriosis/#commentsFri, 27 Jul 2012 04:14:43 +0000http://www.fightlikeagirlclub.com/?p=6708After everything I’ve been through, I figured that I would share my story with you. My name is Lanah and I have been battling Endometriosis for 14 years and counting. My problems started when I was 11 years old when I went through my first period. My periods would get so bad that I would …

]]>After everything I’ve been through, I figured that I would share my story with you. My name is Lanah and I have been battling Endometriosis for 14 years and counting. My problems started when I was 11 years old when I went through my first period. My periods would get so bad that I would miss one week of school each month…the week of my period. I would lay on the couch with a hot water bottle and writhe in pain. This lasted for quite some time which also caused problems with school, due to all of my days missed. Also, my immune system has always been very weak, so not only did I have to worry about my periods but I also got ill quite often. I also suffer from Raynaud’s syndrome (which I recently found out can be endo related) and Asthma. I have never experienced a day without pain. As the years went on towards the age of 14, I started experiencing severe gastric problems. I would have what I referred to as “attacks”. My stomach would suddenly start hurting extremely bad. I would wake up crying and balled up in pain.

I went to numerous doctors who couldn’t find anything wrong with me. I went to research hospitals and was checked for numerous diseases. Soon after, I underwent an endoscopy to see if my stomach was functioning. They found food still sitting there 12 hrs later; it was like my stomach was shutting down. The doctors eventually dropped my case as if, “oh well…all tests are normal, even though you’re obviously not…but we don’t know what’s wrong”. My weight went down to 100 lbs at one point; I couldn’t eat. Due to all of my Dr. visits and pain I ended up missing a whole semester of school. I caught up…though it was a long process.

My mother had mentioned endometriosis but we got the whole “she’s too young for that” speech and was told to be on our way. Little did we know we were right all along. My mother had severe period issues as well, leading to a 6 month no-stop period, resulting in her having a partial hysterectomy (ovaries left).

The years went on, I kept going to the ER at least once every other month if not more frequently and I just suffered with my period and GI issues. Not being able to eat, vomiting every day…it was horrible. I had gone to the ER so many times I was used to IVs, like they were nothing…never thought I’d be used to those. Every day I would wake up in pain, never getting more than a few hours of sleep a night. I’d throw up every morning and spend the whole day in pain. I dreaded going to bed because I just knew how horrible the coming morning was going to be. I was even told by Drs that everything was “in my head” because they just couldn’t find anything wrong. I kept going to Drs, every now and then, still receiving the “normal” test results. I went through life, enlisting in the US Military at age 17, attaining my LNA, working as a Zoo Keeper, and trying to live life as normal as I could. Eventually, at age 20, I moved across the country and my problems still persisted. At age 24, I found a GI doctor who performed another endoscopy and stated that my stomach lining was very thick, but could not tell why. I then found another GI doctor who performed electrical studies on my stomach and suggested endometriosis. Then, with his recommendation, I found a local women’s clinic. I went in and stated all of my issues and medical history. She agreed to do the diagnostic laparoscopy to check for endometriosis though she stated that she did not think that this was my issue because of all of my GI issues.

On March 7, 2011, my Dr performed the diagnostic laparoscopy (3 abdominal incisions). After the surgery, I woke up and the first thing I asked the nurse was “did she find any?” The nurse went away and came back. She told me that the Dr. indeed had found endometriosis. That was the first time in my life that I had ever felt such an amazing relief. Some people can’t understand why I’d be so happy to have the diagnosis. It was because I finally knew what was wrong. Proof that it wasn’t “in my head” or that I was “making it up”. Definite, legitimate, irrefutable, proof. I spent the night in the hospital and my Dr. came in the following morning. After talking to her, I had been diagnosed with Stage 3 Endometriosis. Now I knew what I was facing and I started treatment right away. I also found a pain Dr. that put me on Lortab and Neurontin for the pain. It helped but not very much.

I was also put on Depot Lupron. I was on it for 7 months. While I was on Depot Lupron, I did notice some relief from my pain. I read about a lot of people having bad side effects while on Depot Lupron, but I guess I was lucky; I did not have any negative side effects. I still had nausea but it wasn’t as bad as it was initially. My Dr. explained how I couldn’t stay on Depot Lupron for over a year due to negative side effect risks. After stopping the Depot Lupron for only a short time, I was right back in the ER. After getting out of the hospital for what felt like the 100th time, which was more literally like the 20th time, I went to see my Dr. to discuss further options.

After talking to my Dr. and being in so much pain for too long I opted for a total hysterectomy. She scheduled it for one week later. This is where another hard part came in. I had one week to adjust to the idea of having a total hysterectomy. One weeks notice isn’t very long to adjust to this. I wanted to have children…but honestly with all of the pain that I was in I don’t know if I could be off pain killers or treatment to even try and conceive. I also didn’t want the endo reaching my brain since it had already spread to my stomach, or traveling through my blood since I also have a circulatory disease (Raynaud’s syndrome). My pain was too unbearable and I could not live. I couldn’t hold a job, go anywhere, or enjoy life. I was not living…only simply existing.

Thankfully over the past 4 years I have had a wonderful man by my side who has been understanding of my disease. We got together before I was diagnosed shortly after I moved across the country. He went with my to the ER all the time, was with my for my diagnosis, and every surgery. Support is a very important aspect of dealing with this disease. Thankfully I have had my Fiancé, my parents, and my dachshunds. I also had to take him into consideration with my hysterectomy surgery. We are not married, but plan on doing so soon. He was okay with the idea of adoption or not having children at all. I did, in the end, have to make the decision for myself and no one else.

He helped me cope with the decision and helped me see the brighter sides of it. Being able to travel and enjoy life and adopt when I’m financially ready and stable enough. Don’t get me wrong, the thought of not being able to have a child runs through my head every day, multiple times a day. I just have to be strong and not let that hold me back from doing good in this world and enjoying life. I have to look at it as an opportunity. It gets hard when I see my friends online with Facebook and such with their children, knowing that it’s something I’ll never have. But I can have somewhat more freedoms now instead of being surprised by pregnancy. It is hard to keep seeing the bright side, but I’m trying.

On October 4, 2011, I went to the hospital to have my total hysterectomy surgery. I was so scared. I arrived to the hospital accompanied by my Fiancé and my parents. I went in to register for my surgery and I was in tears. The girl who was taking care of my paper work looked up and said “you’ll feel a lot better after this, trust me”. I asked her if she was familiar with Endometriosis. Come to find out she had undergone the same surgery for her Endometriosis. For her it was a success, though she already had a child. I finished my paperwork, feeling a little better after talking with her. Once up in my room, it was found I had a fever, but my dr decided to proceed with the surgery anyways. She came in and re-stated the surgery and made sure it was what I wanted. In my head I was thinking “of course I don’t want this…but I want to have a life”. I agreed and I was wheeled into the operating room, after saying goodbye to my family. Thoughts were racing through my head. I was torn. I wanted to have a child so bad. To experience that feeling in my body, to create life, to see my eyes in a child. Keep in mind I’m only 24 years old and undergoing a total hysterectomy. I felt speechless. I saw all of the equipment and stirrups. Those made me feel a little uncomfortable. The whole process of the hysterectomy hadn’t been explained to me as well as it could have. I was under the impression that everything was done via the abdominal holes…I didn’t know anything was to be done vaginally until the last minute. Not a fun surprise. Thou I did watch a good YouTube hysterectomy video. They put my mask on and to sleep I went.

Once I woke up, I was in so much pain. I asked for pain meds and they were already going in my IV. I spent the night in the hospital and was told to get up and start walking by the nurse staff the following morning. I did what I could with the pain I was in. I ended up having 5 abdominal incisions. I went home and began to recover, taking it easy, and slowly doing more activity as I could. Recovering physically has proved easier to deal with than the emotional recovery, though that is coming along at its own pace.
As for pain medications, recently my pain Dr. retired and I had to find another one. This new Dr has put my on a larger dose of Neurontin and put me on tramadol. Thou the tramadol doesn’t seem to do much, she is worried about the side effects of Lortab, so she’s trying to find something that works. It has only been a few weeks so I hope I see some improvement.

Regarding my GI issues, my Dr. thinks that the endometriosis had spread to my stomach. She found endometriosis all around. She said that if the cells were inside my stomach that she couldn’t do anything about it without damaging the stomach tissue. I currently use dissolving Zofran tablets (generic) to help with my nausea. Currently, for HRT, I’m using Evamist; it’s a spray-on HRT. I spray it on my forearm every day. So far I haven’t had any issues with it. I’m also taking Vitafusion Calcium supplements and multi-vitamins.

Having no insurance during all of this was very difficult. I charged most Dr. visits. I was able to get onto a county health program which paid for my Gyn Dr, who I was seeing for my endometriosis. My insurance money was running out so I had to get the hysterectomy while I still had funding. It’s not something that I was happy about being rushed into…but I was in too much pain and I was running out of options. If I waited, I may have not been able to get the surgery when I needed it. So I had to do it now.
I have noticed some improvement from the surgery, but I still have my bad days. Hopefully I start to have more good days than bad. My incisions have healed up well. It’s still hard to adjust to what has happened to me.

I went from 1997 to 2011 suffering, not knowing what was going on, wanting a child… to March 2011 being diagnosed with Stage 3 endometriosis… to October 2011 having a total hysterectomy. This has felt like a whirlwind of emotions and medical drama in such a short time. I can hardly comprehend what has happened in this short year. I know that this is a lifelong battle andI’ll fight through it with everything that I have. Through everything that endometriosis has done to me, it has taught me a few things. It has taught me to be strong, even when things are at their worst…I think about what I’ve survived and it gives me the strength to push through. It has taught me to be patient. There are a lot of things that we just simply cannot control. Life is uncertain and I have to go with it. It has taught me to be independent. I needed to do the research on my own and not stop when the Drs didn’t have answers. I kept pushing to find out what was wrong. It has taught me to be a survivor. Being in as much pain as endometriosis causes every single hour of every day, it has made it easier to get through other obstacles. I find myself with a constant attitude of determination and strength. Im ready to take on the world…probably because that’s what it feels like your doing every day with endo anyways. I am a warrior constantly fighting for the potential chance to maybe enjoy each day. Finally it has taught me even more so to be thankful. endometriosis has ripped away my life and my dreams, but I am thankful for the new perspective that it has given me. It has taught me that even if you lose something, you didn’t lose you. I cannot have a child, that dream was ripped away. I can still do a lot of good in this world, be it adopting a child, creating a helpful organization, or just helping others somehow. I can travel and still do good for others even thou I cannot do other things.

My whole life has been changed and new challenges have reared their faces. I’ll accept these new challenges and obstacles and try to live my life to the fullest. Thank you FLAGC for letting me share my story and thank you for taking the time to read it. I hope that my story has helped you in some way whether I have inspired you just a little or just the comfort knowing that you’re not alone.

“It’s not enough to simply exist; it’s time to start living.

Lanah
Texas
Submitted 11-22-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

]]>https://www.fightlikeagirlclub.com/lanahs-fight-like-a-girl-story-endometriosis/feed/4Samantha’s Fight Like a Girl Story (Endometriosis)https://www.fightlikeagirlclub.com/samanthas-fight-like-a-girl-story-endometriosis/
https://www.fightlikeagirlclub.com/samanthas-fight-like-a-girl-story-endometriosis/#commentsWed, 04 Jul 2012 01:33:15 +0000http://www.fightlikeagirlclub.com/?p=6685“Endometriosis”….. This word used to be so foreign to me. An unknown word, disease, condition. Hard to pronounce and I was finding it even harder to understand. A disease that is so ‘hush-hush’ – very few know or understand. A disease that the iconic Marilyn Monroe had, Queen Victoria as well… From 100’s of years …

]]>“Endometriosis”….. This word used to be so foreign to me. An unknown word, disease, condition. Hard to pronounce and I was finding it even harder to understand. A disease that is so ‘hush-hush’ – very few know or understand. A disease that the iconic Marilyn Monroe had, Queen Victoria as well… From 100’s of years ago to even 50 years ago, there have been very few forward advances in education and research. Now in my heart, I want to strive to teach others this word, this condition that affects so many, this disease that can completely stop and topple a life that I worked almost a decade to accomplish.
I’m currently ‘still’ picking up the pieces. Let me take you back and try to explain the journey.

My name is Samantha. I am a mother, a wife, a daughter, a sister. I was blessed to have two beautiful children, my mini me’s – both redheads like Mommy. I am married to a man I fell in love with the first time I touched him. He is my 1st love, my high school sweetheart, and my soul mate. We’ve been together 15 years, married for almost 10, but even my husband still struggles with this word, this condition, this disease that has changed his wife – the words from our vows, “in sickness and in health” ringing in our ears.

I was officially diagnosed with Stage 3 Endometriosis on Feb 6, 2010. The ONLY reason I was able to be diagnosed was because I put my foot down and insisted upon having my tubes tied @ the age of 29. I had been to the OB-GYN several times over the years before, complaining of the sharp, stabbing pains in my side. This coupled with my other symptoms of back pain, pain with sex, extreme cramping, and heavy bleeding during my periods lead me and the doctors to believe I may have Endometriosis. Birth Control, Depo Shots, Pills. As many women may know the roller coaster ride that these medicines can put you on, well at least for me… I was done with Birth Control and insisted on a tubal ligation.

Upon waking up from surgery I was told that it was confirmed that I did have Endometriosis and several cysts that were removed. The sharp pains I was experiencing previously were cysts rupturing or rubbing. Regretfully, I honestly just took this information and put it in the back of my mind. Stuck it in my back pocket and moved on with my life. A lot of things playing a factor, uneducation of what this disease was that I had been diagnosed with, my ignorance, just taking the information and never doing anything about it. Not until August of this year. I have been dealing with the symptoms that I was experiencing for so long and its sad to say, but I was ‘used’ to my routine, but in August of this year, I experienced a “flare” due to stress. My symptoms changed dramatically. I lost 20lbs in just a few weeks; I was nauseous and throwing up 5-6x a day. The pain in my side abdomen was constant, my back pain was extreme. Also I am still experiencing GI symptoms, painful bowel movements and gas. My primary care doctor requested an ultra sound, blood tests, CT scan with iodine injection! Needless to say to all the women who suffer from this disease know that this nasty, insidious disease hides from all of those tests. Desperate for answers I was surfing the internet, searching symptoms and Medical sites. Finally a light bulb went on when I crossed a support group site for Endometriosis. I found so many women describing to a ‘T’ what I was experiencing.
I’ve learned so much from these women, sharing their own experiences, questions, and fears and educating me on this disease. I find it greatly disheartening that there is not more information available. Why this disease is not spoke of in sex education classes. If 1 in every 10 women or girls has Endo, why is it not a public education topic??? Why did I have to learn about this disease via the web, and come to find out other women in my own family has had full hysterectomies before the age of 30!!! Why did I have to surf the web at endless hours of the night, desperately searching for answers. I clicked through so many stories of other women struggling with this disease and how it has affected their lives. Suffering, just like me, silently, trying to continue with a normalcy of life that is further and further out of reach. The empowerment I felt when I read about another woman who was experiencing what I felt, and I wasn’t crazy… or imagining the pain… or looking for attention. You hear so many women share the same remarks, the same disbelief from their closest friends and family members. Husbands and friends who think they are exaggerating….. complaining… telling you to ‘suck it up’ or ‘be tough’ when you know you’re already doing all those things and this disease is fighting you.

I’ve chosen and prayed not to let this disease beat me – that I will fight to regain my life. I want to be the Mommy again that can get up in the morning with her two small kids and make breakfast and laugh and see their gorgeous smiles. I want to be the wife that feels good enough in her own skin to make her husband happy. I want to be a good friend that can make plans and keep them, not having to call and cancel because I’m not feeling well or even worse, I have anxiety over going out and in the middle of the public eye and start to get sick.

I have chosen to go see a specialist in my disease, a man that I know will have the understanding of this disease and be able to perform another surgery to remove the current Endo growth and cysts – Dr. Cook of Las Gatos, CA. I hope to schedule time to see him after the hustle and bustle of the holiday rush that is currently upon us. I have already spoken to my insurance and know that it will be covered, I have completed the forms necessary and I’m currently just waiting to gather all my previous records and surgery images to send down to his office.

I know this journey ahead is a long road, as there is no cure for my disease. A disease that affects too many women and girls to go unnoticed, yet it does. A disease that so many doctors are not educated on. These women and children should not have to suffer with doctors that don’t believe them or don’t take them seriously. This disease that has affected beautiful sex symbols, starlets, royalty and all other women across the globe. A disease that affects ME and those around me…. But I will Fight Like a Girl and help spread awareness – not only see through my own journey in this disease, but help my daughter with her possible upcoming battle – that she will not be afraid or ashamed to ask questions or ask for help if she is experiencing symptoms and most of all I will not let her suffer in silence, we will have a voice.

Samantha
California
Submitted 11-21-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

]]>https://www.fightlikeagirlclub.com/samanthas-fight-like-a-girl-story-endometriosis/feed/3Anastashia’s Fight Like a Girl Story (Endometriosis)https://www.fightlikeagirlclub.com/anastashias-fight-like-a-girl-story-endometriosis/
https://www.fightlikeagirlclub.com/anastashias-fight-like-a-girl-story-endometriosis/#commentsThu, 28 Jun 2012 05:44:29 +0000http://www.fightlikeagirlclub.com/?p=6641Where do I began? I started my period at the young age of eight. Now, as you can imagine, I was scared out of my mind. Right off the bat, my mother took me to the hospital because they assumed someone was sexually abusing me. That was the worst experience ever! From the first day …

]]>Where do I began? I started my period at the young age of eight. Now, as you can imagine, I was scared out of my mind. Right off the bat, my mother took me to the hospital because they assumed someone was sexually abusing me. That was the worst experience ever!

From the first day of my period I would have unbearable pain. The pain was so horrible that I stayed out of school at least two to three days a week. When I went to my mother she would give me pain medication as she thought it was just cramps. This pain had become a part of my life that I coped the best I could with and I thought that it was normal.

As I got older, I realized that none of my female friends were ever in as much pain every month as I was. After seeing that my life and pain was definitely not normal I started going to the doctors and asking them what in the world was wrong with me. Well, my success with doctors was not good. Every doctor I went to either gave me birth control pills or other remedies that did not work. I finally started trying to diagnose myself. When I came across the word endometriosis and the symptoms, I immediately said to myself ‘this is what I have’.

While visiting doctor number 9, I explained to her the symptoms I was having. Vomiting, diahrrea,sharp pains in my side, headaches, and the list could go on….she stops me and says ”well if it is endometriosis just get pregnant and it will help things out”…..(blank stare). I was dumbfounded by that comment and just gave up hope.

Time went on and I finally met the love of my life. We started talking about having a family and the whole shabang! After about a year of trying to conceive, I said maybe I need to go to the doctor and see what the deal was. So doctor number 10, here I come. When I met my new doctor she immediately listened to me and heard my cry for help. She sent me through a series of tests and everything was coming back normal, except I had two fibroids. She said that since she couldn’t figure out any other reason for me not getting pregnant she would go in to remove the fibroids and hope that I could get conceive afterwards.

Well surprise, surprise…when I go to have my surgery to remove the fibroids, I was diagnosed with (severe) stage four endometriosis. My doctor said she could not touch it because she was not going to mess up anything worse than what it was. I could have just died. She showed me the pictures and the anatomy of my reproductive system. The pictures looked like it could be on discovery health or something. My right ovary was on top of my uterus. The left ovary was wrapped around my colon and was attached to the back of my uterus. My appendix was completely covered in endometriosis. All I could do is cry and wonder ‘why me’.

The next step now was trying to figure out who could correct the problem. I mean, here I am 27-year-old and wanting babies. My doctor called me and said she found a doctor in Atlanta at the Center for endometriosis care. At this point I told her I would run there, if they would take me. When I called, they scheduled my surgery right away, for October 12, 2011. I had my surgery and when I woke up, my left ovary and tube had been removed. My appendix was taken out, two eight week old (in size) fibroids had been removed, and my anatomy put back together the best way possible. I am now given a 50% chance to conceive.

From that point on, I said that I have to advocate for women and young girls who are suffering as I did. A painful period is not normal. I want to speak out because I feel like if more people and doctors knew about this disease, the severity mine and many others would not have to get as bad, especially to the point of a hysterectomy at a young age. I have seen and heard horror stories where young women go to doctors and because of the lack of knowledge they are given hysterectomies, no hope, and still in pain. This disease has been HELL in my life for well over 19 years and no one should have to suffer the way I did. I am now five weeks post-op and I feel like a brand new woman.

Anastashia
North Carolina
Submitted 11-18-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.